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We at Findacure believe support groups hold the key to a better future for rare disease patients. They are in the best place to reach out to patients and provide them with the support they need, they are the most motivated to push research forward, and they are a point of contact for any researchers wanting to investigate the disease or a potential treatment. Therefore, we believe training and upskilling these groups is of utmost importance.

This week saw the sixth and final webinar of our first ever webinar series, which intended to do just that. Complementing our other patient group empowerment programmes, including our workshopspeer mentoring scheme and online portal, the webinars provided an opportunity for patient groups to learn from the comfort and convenience of their own homes – assets that can be of particular importance when living with or caring for someone with a rare condition. They also allowed us to tackle more niche topics that wouldn’t constitute full workshops.

Each of our webinars featured two experienced speakers and a half hour Q&A session. All of them were recorded to ensure the learning lasts long beyond the initial broadcast, and we are delighted to share them all with you now.

Webinar 1: Health Literacy Explained
Health literacy is the ability of individuals to gain access to, understand and use health information (WHO). People with low health literacy are more likely to have their condition limit their activities and have higher mortality. This webinar introduced the concept of health literacy and shared how patient groups can present information at the right level for their patients.

Speakers: Gill Rowlands, Professor of Primary Care at the University of Newcastle, and Claire Murray, Joint Head of Operations at PIF.

Webinar 2: Website Development Explained
The internet is often the first port of call for rare disease patients when they search for information about their condition. It is really important that patient groups’ websites provide reliable and accessible information, and that they stand out from other less-reliable websites. This webinar introduced how patient groups can set up and develop a website on a tight budget.

Speakers: Rory Stobo, Chief Copywriter at Sookio, and Tania Tiarroro, founder of Special Needs Jungle.

Webinar 3: Raising Awareness Among Healthcare Professionals Explained
The average rare disease patient waits four years before they receive their final diagnosis, during which time they consult with five doctors and receive three misdiagnoses. This webinar introduced the different approaches patient groups can take to increasing awareness of their rare condition among healthcare professionals.

Speakers: Lesley Harrison, Patient Support Manager at the AKU Society, and David Head, Chief Executive at the Haemochromatosis Society.

Webinar 4: Medical Research Explained
The medical research field can be complex and overwhelming. If patient groups want to drive forward research into their conditions, they must get to grips with it. This webinar walks through the basics – including the stages involved in a clinical trial, the key stakeholders involved, the difference between basic and applied research, the importance of toxicology studies, and deciding a dosage.

Speakers: Oliver Timmis, CEO at the AKU Society, and Sarah Venugopal, Lead Community Manager at Raremark.

Webinar 5: Patient Engagement in Medical Research Explained
Patient involvement is really important in multiple aspects of research – from deciding what type of research funding should prioritise to designing clinical trials. This webinar shared the different approaches patient groups can take to give patients a voice in the research process.

Speakers: Julian Isla, Chairman at Dravet Syndrome European Federation, and Anna-Louise Smith, Research Support Network Manager at Parkinson’s UK.

Webinar 6: Developing Medical Guidelines Explained
Medical guidelines share best practice for managing a particular condition with healthcare professionals. Many rare diseases do not have up-to-date guidelines, but patient groups and charities can fill the gap by working with researchers and clinicians to develop them. This webinar shared the experiences of two rare disease patient groups who’ve done just that.

Speakers: Carol Ossai, Founder at Sickle Cell & Young Stroke Survivors (SCYSS), and Julie Vallortigara, Research Officer at Ataxia UK.

We would like to say a huge thank you to all of our fantastic speakers for the time and effort they put into their presentations, and to our sponsors Comradis, without whom we really could not have run the project. All of the webinars will be written into guides on our online resources portal in the near future, so if you find text-based learning more accessible, do watch this space!

We are currently seeking funding for a second series of six webinars. If you know of anybody who might be interested, please do contact [email protected] for more information.

Our first webinar series is complete

by Libbie Read time to read: 3 min